July 2010 Rads

spendygirl

Ladies - once again, we are in sync.  I'm kind of embarrassed to admit this, but I broke down in the onc's office today.  I've never had any kind of bone pain in my life.  Well, my hip hurts so bad and this stupid ankle is huge, I had myself convincIed it must be mets.  I kept apologizing to him for crying.  He was so understanding.  He assured me that it was NORMAL (ugh, that word).  I totally respect his intellect, so when he assured me that Stage 1 without nodal involvement to recur within one year is almost unheard of.  I said to the girls at work, maybe hearing that from him will help me to not be so obsessed.  Then I thought to myself, I have got to make some changes in my life and thought maybe I shouldn't read every single thing on BCO. Maybe just check in once a week.  But I know in my heart I can't do that!  I feel so close to you all, you are my comfort zone where I can share my fears and not be judged.  It's so ironic that we're all thinking the same thing.  BTW, I told my onc today about our group .  Ya know, on FaceBook you can create groups - we could make our own group.  No one else would see our worries, but we would see each other's "public" lives as well.  What do you think?  I also don't feel like I could go somewhere else without all of you!

bailey1958

It's crazy - but I just love you guys. I just can't give you up even though it sometimes seems irrational that I haven't really seen you. I say yes to to the facebook group - how do we get started? 

bailey1958

By the way Kim, talked about the study that said that tamoxifen wasn't as effective with lobular cancer and my radiation oncologist said that was ridiculous and it was in fact extremely effective with ILC, even more so than chemo. 

Houndmommy

Interesting that this has come up.  I haven't posted much lately but I do check in daily and see what is going on with everyone.  I too try not to look at any other threads (other than the prosthesis and lymphedema ones sometimes) and I am doing better at staying away.  I actually have days now where I don't come here and on the days I do, I usually only come once. 

 I really find comfort in your all's posts because it makes me feel I'm not crazy (like I now have hip pain that is getting worse and all I can think about is mets of course but I haven't told anyone cause I feel like they would think I'm crazy). When I read your all's posts I realize that what I am going through right now is "normal" and part of the process.  I think I may be behind many of you in the emotional "coming to terms with what I have been through" phase.  Heck, I'm still obsessing over food, supplements, exercise, etc., lol!  For me, everytime I eat I think about BC.  It is so frustrating!  Also, I should add that I learn a lot from you guys.  I like my docs but don't fully trust them and I feel like I have to be on top of things. 

Anyway, I would miss you all terribly so I hope we can somehow stay connected.  I have avoided Facebook for a long time (heard it was the great waster of time, lol!) but this past weekend I finally took the plunge and set up an account.  I did see an icon on Facebook for groups but know nothing about how it works (I'm still trying to figure out the basics!)  I am also familiar with yahoo groups so that would be an option if Facebook doesn't work for everyone.  

So, while I would hate to see the "band break up" and I hope we can find away to stay together, I certainly understand that some folks feel the need to move on.  I guess I am not there yet.

On a different topic - Karen, my vision seems to have worsened since starting "T" too.  How long does it take cataracts to form?  I saw my eye doc in Sept. and my eyes were fine other than needing a new prescription (slight change so I didn't do it).  I can't imagine cataracts forming that fast!   I hope you get another eye appoint. soon.

Sonia - have you asked your doc about the ILC/Tamoxifen issues that surfaced in the fall?  I saw my med onc Tuesday and asked her about it.  She wasn't familiar with the study and then gave me her reason that I shouldn't be concerned.  I felt better until I realized (on the drive home) that her reason made no sense in my case!  She said that the oncotype test indicated that my tumor would respond to "T".  That is all well and good BUT the oncotype test only tested ONE of my 4 tumors (the biggest) and it was NOT the ILC!  So her reason not to worry doesn't work for me - Ugh!

Have a good evening everyone! 

Houndmommy

Sonia - you posted while I was writing my essay!  Thanks for sharing what your onc said - I feel a lot better hearing that!!!!!

I love you guys too!  A Facebook group sounds good.  Does everyone have Facebook? 

Houndmommy

Just peaked at the Facebook group set up and I don't think it would be difficult.  I guess we'd have to PM each other our names so we could "friend" each other and then set up the group. One thing I am wondering, could we keep the things we discuss in the"group" section private (I saw some choices related to that).  Sometimes I say things here I don't think I'd want everyone seeing (for example, my son or my mom - don't want them to worry over my craziness!)  Facebook might be the best of both worlds in that we don't come here and get sucked into reading things we shouldn't, we can get to know each other beyond BC but we still could share our BC issues/struggles.

bailey1958

I'm totally in for facebook but would prefer to keep it a private group - definately don't want to mix my public page with breast cancer recovery stuff. 

Kim, my conversation with the onc today really helped me - she and my family doctor slapped me up side the head emotionally. Told me to stop making space for cancer in my head. I said I wanted to have an endometrial  ulrasound and she looked at me with a stunned face and said "WHY? I said to get a baseline and she said - if you have spotting I will send you for one and the baseline will not be useful at that point - besides I have never had a patient who has developed this type of cancer - (she is in her late 40"s). 

Houndmommy

Sonia - my obgyn said they wouldn't be doing endometrial ultrasounds either  unless I had issues .  She didin't seem too concerned over the "T"/uterine cancer thing either.

bailey1958

I have send a few PM's to those of you who seemed to be interested in possibly connecting through facebook. If any of you who are checking in are interested PM me and I will send you my contact info on facebook. I think we should form a little private group and then I know I am going to take this site off my places to go each day. I have decided just the notion of arriving at the breastcancer.org site holds me in this not moving forward place. I feel like this is worth a try and I am really hopeful we can continue to take our friendship group to new levels in a "normal and healthy way".

Julie50

ladies:

I'm in on the Facebook, I'm on there so much already that is how I stay in touch with most of my friends.  I am under "Julie Richardson photo with a white coat on". 

Houndmommy

Sonia and Julie -  I have found you on Facebook and I set up a group (but don't really know what I am doing so someone else may do a better job of it.)  We will need a group name. It would be great if we could come up with some kind of fun, non-BC name.  I just called us "July Rads" again (and I'm fine keeping that name or changing it).

Looking forward to meeting the rest of you Facebook.  I'll PM you my contact info.

Kim

Chicago1018

Hi Ladies -

You aren't going to believe this but I am not on Facebook (I know, I know, startling for a person in their 30's  )

It sounds like I am the only one though.  I've avoided signing up but maybe this is the push I need to do it!  My siblings would be so pumped.  :-)

Amanda

bailey1958

I think you should Amanda - it won't be the same without you.

changes

Hi all,

A facebook group sounds great. Kim, do we just find it under July rads? I'm on Facebook, but don't know anything about the groups. Looking forward to our "meetings" being in a non-oncology "place"! I'm sure I will still check breastcancer.org, but probably less vigilantly.

Tracye - don't feel bad for the tears at the oncologist office - I'm sure they  are used to it. I still worry, too, about every ache and pain, but I am getting better about talking myself down. I appreciate my oncologist because he just calmly reassures me when I start to go off the deep end (whereas the surgeon gave me the stunned look when I started asking about a bilateral mastectomy after I was freaked about the BIRADS 3). I am starting to be able to laugh at myself for my fears a bit, and I am hoping that is a sign of recovery.

Sonia - my oncologist was completely unconcerned that I had some spotting on Tamoxifen (only one day and not really all that bad). I am pleased to say that I have gone over a month without a period! There might be a good side to Tamoxifen, after all!

Kim - as far as the cataracts, my oncologist said he has not seen anyone develop cataracts quite this quickly (I'm just starting my 8 month), but he said it could happen.

Amanda - you might be the youngest one here, and you don't have Facebook! Hah!

Karen

 Karen

Houndmommy

Amanda - I am older than you but am the last of my friends and family (my 74 year old mom has an account!) to get on Facebook.  I just set one up last weekend.  My son finally convinced me to let him get an account so that meant I had to bite the bullet and get one myself.  I am still learning and trying to figure things out but it has been fun so far. 

Hope to see you on Facebook soon!

bennybear

Wow things move quickly here.   I don't have a facebook page either,  have been avoiding it.   Are we able to keep our discussion private there?  Just want to control that and I don't really know enough about it,  but don't leave me behind so please pm me as well.

 b

bailey1958

I just pm'ed you Brenda.

Houndmommy

Amanda and Brenda - I am glad to know that I wasn't the only one avoiding the whole Facebook thing. 

I will continue to check in here so for those of you that want to join us on Facebook, let me know and I'll give you my info.  For those of you that would rather stay here, I don't mind continuing to meet you all here.

Have a good evening!  Kim

MagPag

Hi Ladies,  I'm sooooo far behind.  Going to read up today while half watching the game.

Sorry for not checking in.  The LE therapy and wrapping have gotten me down.  It's finally starting to work and my fingers all measured about 1 CM smaller this week.  I've got compression everywhere and hard to do anything with my hand wrapped too. 

Glad to see that I wasn't the only hold out on Facebook. I don't want to loose touch with all of you so this will push me over the edge to join.  Will work on getting an account today too.

Look forward to reading all your posts from the last couple of weeks and hope this finds you all well.  Miss you.   Donna. 

Houndmommy

Hey Donna!

Glad you are going to join us!  I will PM you my contact info. 

Glad to hear your LE therapy is working for you.  I know the entire thing is such a pain.  I only have it mildly in my trunk and i can't keep up with all I am supposed to do - who has time?!

Happy Superbowl!

Kim

MagPag

Hi, thanks for the facebook info Kim. Haven't found anyone yet, guess I'll have to ask my 14 year old for help. He'll get a good laugh.

totally with you on the time commitment with the LE. It's a full time job between the massage, wrapping, washing the wraps, etc. If I get half in each day it's a victory.



Trish, so sorry to hear about your recurrence. Sending you hugs of strength and hope your treatment all goes well. We're here for you.



Take care. Donna

NotAgain2015

Hi you guys.  I'm doing ok.  Have a plan and will make it through.  Had an MRI today, they found nothing else and what I have is small 3.8mm. 

Was hoping I hadn't brought you all down with my scare.  Statistically this will not happen to you!!!  I will have to find ya'll on Facebook so I can check in from tme to time, but not drag you down. 

Thanks Donna for the well wishes.

I think it is good you guys are moving on ... it is time.  I had started to do the same last fall.  So glad you are going to keep your friendships though. 

Trish

changes

Trish,

Glad to hear the MRI found nothing else - you deserved a little good news. When are you having surgery? Any word yet about chemo?

Don't worry at all about dragging us down! The risk of recurrence is just one of those things we have to live with. PLEASE ask for support whenever you need it.

Sonia (bailey) is set up as the administrator on the Facebook page, so just PM her your contact information and she can get you added to the group.

Sending hugs your way,

Karen

changes

I have NO IDEA why my last post has "address" listed throughout it?

NotAgain2015

Thanks Karen, will PM her.  My surgery is set for 2/18.  I don't know if I have to do chemo yet.  Haven't heard my HER result and then I guess is also based on lymph node involvement or not.  So time will tell.  Have been reading scary things about lymphedema and know some of you here have suffered with it.

Trish

spendygirl

Hi everyone - I'm going to FB right now and look for the group.  I belong to a work people group and it's private.  I really want us to still be able to share our BC things, but I don't want everyone else to read those things either.  So excited!!

Trish we're all here for you and thinking of you.

Tracye

bailey1958

Hi Everyone.

Trish please don't think you are bringing anyone down. I want to be able to support you and  to know if this happened to me - that you guys would be here for me. We would love to have you in the group - please know you are welcome.

For those of you who want to join us on facebook - I have opened my privacy settings up so I am searchable and easy to find - let me know if you want to join and I will pm my information. 

Chicago1018

Trish - never in a million years think you are briniging anyone down!  I think hearing your experience has been helpful for all of us to think about how we might feel in your shoes and hopefully offer you some solid support.

I leave for my exchange surgery in about half an hour.  Half exited and half nervous (and also very thirsty because I can't eat or drink anything. . .but that is another story).  Good bye brick feeling TE. . .hello new rack. 

bennybear

Hi all,

Trish,  glad it was small and I hope all goes well.  We are here for you and I agree with Amanda we all learn from each other.   

Amanda,  I was just previewing this and your response came up so I am wishing that everything goes well for you today.   I have such a different view of boobs now,  so I laughed about your new rack.  

 Okay I feel better that I am not alone in not being on facebook.  I am happy to check in here as well as it has become a habit for me.  I will work on facebook soon.

I went to my first live support group and it seemed good, but it is early to tell.   I guess I am so used to you guys. 

TTFN

B

changes

Amanda - best wishes on your exchange surgery! Let us know how it goes.

Brenda - I've considered going to a "live" support group. I have this fear it will be me and a bunch of 80-year-olds! I am basing this on the fact that every time I've been in a doctor's waiting room this past year, it's been me and a bunch of 80-year-olds! I also know that once I start going, I will feel obligated to keep going, even if I think I'm ready to move on. It's tough being so neurotic (LOL!)